So after several months, maybe more than a year really, of feeling like I was just generally a bit worse, last weekend my energy took a nosedive and laid me out again. Today is the first day since Saturday that I’ve really started to feel a bit closer to normal. I’ve been dressed all day, did five hours work at the computer and managed a walk down to the corner and back (roughly 375 meters). That’s a lot better than yesterday when I didn’t get dressed until lunchtime, did 2 1/2 hours work at the computer and walked down the drive and back (with a stick).
Everyone seems to experience ME differently. I say that I have a fairly mild case, which surprised one of my friends when I said it as she thought mine was quite severe. It’s almost impossible to describe but I will try, if only to have a record.
When I am sitting it feels like I can feel all my cells vibrating. Sometimes I call this feeling fuzzy but that suggests its a head thing when really it feels quite physical. When I try to move anything it feels very weak, like the brain is sending signals but they’re getting corrupted halfway along the process and the body is uncertain what to do with it. It’s like the muscles are trying to move but there’s simply no fuel for them. When I walk I feel as if my knees may buckle at any moment and I feel unsteady, uncertain about the haptic (?) feedback provided, like is the ground really there, has my foot managed to find something solid or will it give way? And this isn’t just a ‘feeling’ I am actually much clumsier when I’m worse, I drop things and stumble, I bump into people.
At the same time the mind is clouded, foggy. Processing information is difficult, I find telephone conversation almost impossible because it lacks the visual cues of face to face, and I don’t have the time necessary to work out what is going on. I can’t read for longer than about ten minutes as I can’t concentrate that long. I am not sure that anything that I do read actually stays in my brain anyway so I look out the window or watch something on TV.
It’s more than just not being able to concentrate though – I feel disconnected to reality. It’s almost as if I’m floating in a virtual world where I am unseen. Things happen around me but don’t affect me, a bit like people watching from a cafe window, or being in a room of people speaking in a language you don’t understand: you see, you hear, but it’s alien.
But I am very lucky. Firstly because these periods of being worse always get better (knock on wood) and I know very well that I could be chair bound or bed bound, locked in a darkened room 24/7, unable to deal with any kind of noise or light as sufferers of severe ME are. And of course because Nick takes such great care of me, walking Kiwi when I can’t and making dinner, picking up my prescriptions etc. Also I have great employers and the luck of being in a job that is done sitting, at a computer, which I can do even from home.
But its still hard to go from a participant to a spectator, and knowing that its probably a permanent change there’s only so much joy one can get from watching out the window.